Oncology appointment, how much of decision about chemo left to me?!

Hi all, I am new to the forum, have just read through some recent threads and already feel better and more informed! So thank you. I have my first appointment with the oncologist tomorrow and was feeling really anxious earlier, mostly in relation to the decision about chemo, not so much about having chemo itself! I had a left mastectomy 5 weeks ago for invasive ducal, grade 3, tumour22mm, stage2, ER positive, but the rest negative. Lymph nodes(8 removed) all negative. Surgeon said he got clear margins and was pleased with surgery. No thoughts about re construction yet, all for later! I am 45. I will try tamoxifen soon. I have had a look and am worried he is going to say that I fall into that 3 to5% box, where having chemo would give me that amount extra, and he is going to leave more of decision up to me!! I don’t know what to do! I am going to ask about the oncotypedx too. Anyone else been similar?

Hi Lush, I am very similar to you BUT I had reconstruction immeidately. 5/15 Lymph nodes were positive for cancer, but they removed them anyway. I had 2 grade 2 tumours in left, 13mm and 15mm dont know what stage or any more than that. It was always a given that I was having chemo as lymph node involvement. I have now also been told I have to have radiotherapy 25 sessions over five weeks (hospital 50 mile round trip…) this had never been mentioned before, but they are worried about lymph nodes above breast and in shoulder etc. I start chemo on Tuesday and am dreading it tbh, BUT I am trying to stay positive…I want everything they can throw at me to get rid of this permanently I hope. I know the treatments are awful but the consequences are even worse. I also have to have 10 years of letrozole, which seems to be longer than most people get it for. The norm seems to be 5 years. However, I will be guided by the experts and deal with whatever is thrown at me as best I can and in the most positive way I can. Good luck xxxxx Val xxx

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Hi and welcome to the forum,
I am 42, I had grade 3 IDC and high grade DCIS in right breast. Had mastectomy and reconstruction in December, the tumour was 17mm, nodes clear. I was given the choice of chemo or not by the oncologist as it would give 5% benefit. I also had the oncotype-dx test done.

Without oncotype I would have said yes to chemo anyway as I had to feel I had done all I could to prevent recurrence. The oncotype result came back as high risk of recurrence which recommended chemo. I am due to have cycle 4 out of 6 tomorrow and although it’s not the most fun ever it’s just for a short time and is worth it for my peace of mind.

My surgical team and BCN both said that without oncotype test I should have chemo because of my age and the fact that it was a grade 3. But they were also sure that if the results of oncotype came back as low risk then no chemo would be necessary.

Good luck with your meeting tomorrow and with any decision making you have to do! Let us know how you get on.

Carmen xx